In the world of rare diseases, narratives of struggle, resilience, and hope often remain untold. To bridge this gap, Niemann-Pick UK’s Head of Communications, John Lee Taggart, has written and directed a powerful new concept short film* with the support of the talented cinematographer Craig Crouchman and a small creative team. This project is more than a creative endeavour; it is the beginning of a much larger mission: to hopefully bring the wider story of those affected by rare diseases, specifically Niemann-Pick disease and lysosomal storage disorders, to the forefront of public consciousness, through a longer-form feature film.  

This film was independently produced and only made possible through crowd and self-funding. Whilst it supports both the UK LSD Collaborative and the Niemann-Pick community, it was created with no creative or financial input from the organisation.*

Hadid and I is a dramedy which follows the life of Richard “Rich” Marwood (Jacob Anderton), a recently bereaved husband who is struggling with the loss of his wife to the rare genetic condition, Niemann-Pick disease type C – despite being surrounded with life, love, and laughter through friends and family, he still understandably finds himself totally lost.  The film balances moments of deep emotional impact with light-hearted, sometimes dark humour—a storytelling approach reminiscent of Ricky Gervais’ After Life, with the hope of making the story more accessible for broader audiences. 

The narrative reflects the complexities of family dynamics, friendships, and the often unseen battles within the rare disease community. It captures the tension between hope and despair, the strain on relationships, and the small, everyday moments of joy that keep families going. It’s a story about ordinary people facing extraordinary circumstances, brought to life through a unique blend of comedy and drama that aims to break through the conventional barriers of the rare disease and charity space.

For John Lee Taggart (Invisible Manners, A Rare Find) this project is deeply personal. After spending eight years working closely with families affected by Niemann-Pick disease, the story is inspired by real conversations, real struggles, and the profound connections formed with the community: “…over the years, I’ve not only worked alongside these families, but I’ve also been fortunate enough to develop some deep friendships – sharing in their joys, their heartbreaks, and their unwavering hope…” says John, “…this project does away with the slow piano of regular charity shorts and brings a truly human reflection of the rare disease journey through Jacob and Hamzeh**”,

Hamzeh Al Hussien is affected by the rare condition phocomelia and plays the character of ‘Hadid’, a friend from the past who helps to change the main character’s perspective.**

The connections created in the close-knit rare disease community have provided the emotional backbone of the film, informing every line of dialogue and every frame with authenticity and heart. The narrative doesn’t just portray the clinical aspects of a rare disease but dives into the deeply human experiences behind the diagnosis—how it affects friendships, family bonds, and personal identity.

What sets this short apart is its innovative use of comedy alongside drama, a deliberate choice to reach beyond the echo chamber of the rare disease and charity space. By blending moments of levity with profound emotional depth, the film invites audiences to connect with the story on a broader level, pushing the conversation beyond the boundaries of the rare disease community and into the mainstream.

The film, shot over two days, is now being edited with the hopes that an extensive film festival run in 2024/2025 will help build excitement and enthusiasm for continuing the development of the longer-form piece. The team behind the film hopes to resonate with audiences and funders alike, and remain hopeful that this project will push beyond the rare disease community, and help to develop a more inclusive and informed dialogue around rare conditions.

About NPUK

Niemann-Pick UK (NPUK) is a charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. They raise much needed awareness, provide practical and emotional support, advice and information and facilitate research into potential therapies.

They are a small charity with less than five hundred members, the work they do is funded entirely through fundraising activities and successful grant applications. Their strength, therefore, comes from the dedication of our much valued families, members, benefactors and volunteers who work with tremendous effort and loyalty in support of the charity.

Learn more at npuk.org/about-us

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